I'm new to these forums, but I guess I will start by explaining my situation.
24 yo Male, 6' 160lbs, no family history of high BP, diabetes, or CF.
At the beginning of July last summer I was diagnosed with Lyme's (very obvious bullseye rash, flu-like symptoms, aching joints) and immediately went on Doxycycline or 2 weeks and then after a follow up appt with my PCP, another 2 weeks, but with a 3 week period in between without treatment.
Ever since, I have had on and off issues with fatigue, dizziness, nausea, but they would typically go away within a few hours or a day.
The past 2 weeks I have experienced some more severe symptoms: -lightheadedness and fairly constant high blood pressure (I normally have low BP) -an ulcer or a sore on my groin area which the doctor dismissed as an ingrown hair -random itches and pains on my skin, particularly in the groin and legs -mild headaches, along with vertigo that comes and goes -sensitivity to light, sound, and cold -difficulty concentrating/listening to people, shortness of breath, loss in coordination and balance -decrease in quality of vision -random burning sensations on skin -stiff neck and back muscles -joint problems in hands and feet
When these symptoms were constant I went to the ER and all urine and blood tests were normal. I was released when my BP dropped to normal. At a follow up with my PCP, he wanted another blood test to check thryoid, Lymes (which doesn't always show up) and glucose. Still waiting on results for Monday. Is it possible that all of the symptoms thus far is an infection from Lymes, or is it my body herxing, or both?
In the meantime, he has started me on Doxycycline again. With my first bouts with Doxy, I had a little anxiety, but nothing major. After my first dose, I had difficulty sleeping, my blood pressure rose, the next morning (this morning) I had difficulty breathing and double vision for about 30 mins but then those symptoms went away and my whole body began to feel very heavy and I developed chills along with bouts of anxiety one moment, then feeling high the next. I called my doctor, he said it didn't seem to be an allergic reaction, especially since I have already been on it in the past. Later today, I have developed a horrible headache, it mostly feels like tons of pressure on the front of my head/eyes, blood pressure seems worse than when I started. I'm also experiencing mood swings including having high energy which I did not have before the Doxy (I was lethargic/fatigued, although still am mostly that).
Do I call again? Is this just the Lyme infection herxing/getting stronger before it goes back down? Anyone else experience I nasty headache/dizziness or high blood pressure from Lyme's or Lyme antibiotic treatment?
Thank you, hopefully I will know the result of the latest blood test soon.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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GretaM
Frequent Contributor (1K+ posts)
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posted
I have neuro lyme-my word finding is poor. Excuse bad grammar.
Please take me serious.
Could the sore/ulcer in your groin be an embedded tick?
Could it be just tick mouthparts still stuck in you?
Very very serious if not removed.
Ticks love groin areas. Look like ingrowns.
Embedded ticks are toxic. Tick mouthparts left in toxic.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
No, it started as a small red bump and developed into a sore with multiple yellow-tipped heads. Nothing like my original rash.
Its also about -20 with 3 feet of snow on the ground and I have no pets, a tick now is unlikely.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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Judie
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posted
It sounds like a herx and possible co-infection like Bartonella. It also sounds like you were under treated the first time around.
I'm sorry you're experiencing the anxiety. With a herx, you can feel an increase in symptoms.
Here's information on the psychological effects of Lyme:
Here's a link to a thread on what else to get tested for. All my blood work was normal until I had my doc test for co-infections (I had 13).
My blood pressure also went high with Lyme and I had horrible head pressure/headache for two months, even while on Doxycycline. My doc added Ceftin to the doxycycline and the headache finally went away.
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Any chance you were rebitten?
Ticks carry lyme plus other bacteria in their guts that go into the host when they feed.
Doxycycline is not effective against all forms of lyme or against most of the coinfections ticks can carry by itself.
If you are certain you do not have an embedded tick or mouthparts on you (take photos of the sore. Seriously. Needs documentation), then with how you are feeling, it will be in your best interest to find an ILADS trained doctor in your area.
Especially with that sore. Air hunger etc.
If you post in this forum under Seeking, folks in your area will PM you with a good LL. Wait times can be long, but the sooner the better.
It sounds like you could have some classic coinfection symptoms that only an experienced LLMD/LLND could diagnose and safely treat you for.
Others will chime in soon.
I am sorry you are feeling so crummy.
I hope the doxy helps you. Is it low dose, 200 mg per day?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Judie
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posted
By the way, I've had EVERY symptom you have described (I could have written the list myself). It's all been Lyme and co-infections.
You need to work with an expert Lyme doctor to get this under control.
My PCP started me on doxy for 3 weeks when I had the bullseye rash. It wasn't enough. It took 6 months to get rid of Lyme the first time around with different kinds of antibiotics.
The itching can be from biotoxin and/or candida.
Are you taking a binder for the die off from the doxycycline?
My doc has me taking Toxin Absorbmax. It's really helped with the itching/skin stuff.
Also, be sure to take probiotics (away from antibiotics). You need to replenish your gut flora while on antibiotics.
Posts: 2839 | From California | Registered: Jul 2012
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I'm not so sure, there were several other sores on me that were not as severe in terms of pain or size but similar in shape and appearance in different spots on my body. My doctor didn't seem to think much of it.
I have contacted a good LL in my area, I do have a picture of the sore, and blood work (Western blot included) being sent to them, getting an appt within a few weeks.
The doxy is 200mg per day.
Judie-
Thank you for sharing your experience, I will look up those links and ask the LL about all possible co-infections
I'm not sure what a binder is, but I am taking a probiotic and yogurt. I am waiting for a natropath near me to get in orders for some kind of "Lyme tea" as well that supposedly works wonders.
Thank you all for your responses, it means a lot to my mental health.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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mojo
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Member # 9309
posted
Ryan - it doesn't sound like Doxy allergy but more like Lyme/Babs/Bart.
The sweating, anxiety and air hunger is usually Babesiosis for me. Skin manifestations tend to be Bartonella.
I'll bet your Lyme Dr. will be able to sort more of this out for you.
Posts: 1761 | From USA | Registered: May 2006
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posted
In my opinion you were grossly under treated in the beginning. It has a way of coming back .. over and over until you are adequately treated.
Are you still taking the Ceftin? Taking only 200 mg of doxy will not cure this. And as others have said, if you have coinfections you will need even more treatment.
Be sure to take the doxy in the middle of a full meal and do not lie down for at least an hour afterwards.
Take high quality probiotics at least 2 hours away from any antibiotics.
posted
The reason you are experiencing increased symptoms this time is because it looks like you got the doxy soon after infection in the beginning, but now the lyme has become chronic. Yes you are herxing.
Unfortunately 200 mg doxy is not a high enough dose to knock out the infection at this point plus you are not taking anything to treat the cyst form.
Doxy can cause increased spinal fluid pressure which leads to very severe headaches -- does not sound like your headaches are that extreme.
Please post in the seeking forum and request a real LLMD who will treat long term with antibiotic combos.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
It's sounds to me like you are herxing. You are in the very beginning of treatment so the bacteria is dying off and unfortunately with that comes bad herxes. I had a very difficult time with Doxy in the beginning. Make sure you search this site for "detoxification" and see what methods will help you get through these bad herxes. Detoxing is a very important component of treatment. Occasionally, I would skip a day when the herx was really bad just to give my body an opportunity to detox.
You really need an LLMD to treat properly, although your PCP will tell you otherwise. Try to hang in there and get to a lyme doc ASAP.
-------------------- Shelly Posts: 73 | From New Jersey | Registered: Apr 2009
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posted
It's sounds to me like you are herxing. You are in the very beginning of treatment so the bacteria is dying off and unfortunately with that comes bad herxes. I had a very difficult time with Doxy in the beginning. Make sure you search this site for "detoxification" and see what methods will help you get through these bad herxes. Detoxing is a very important component of treatment. Occasionally, I would skip a day when the herx was really bad just to give my body an opportunity to detox.
You really need an LLMD to treat properly, although your PCP will tell you otherwise. Try to hang in there and get to a lyme doc ASAP.
-------------------- Shelly Posts: 73 | From New Jersey | Registered: Apr 2009
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posted
It's sounds to me like you are herxing. You are in the very beginning of treatment so the bacteria is dying off and unfortunately with that comes bad herxes. I had a very difficult time with Doxy in the beginning. Make sure you search this site for "detoxification" and see what methods will help you get through these bad herxes. Detoxing is a very important component of treatment. Occasionally, I would skip a day when the herx was really bad just to give my body an opportunity to detox.
You really need an LLMD to treat properly, although your PCP will tell you otherwise. Try to hang in there and get to a lyme doc ASAP.
-------------------- Shelly Posts: 73 | From New Jersey | Registered: Apr 2009
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posted
Sorry its been a while since I posted, but I figured I would follow up since others may be experiencing similar symptoms.
I saw a LLMD back in April, and she ran some Ig tests and found that I had high levels of Mycoplasma Pneumoniae as well as Celiac's disease. She put me on 600 mg of Rifampin and 200 mg of Minocycline per day for a few months and then continued that treatment along with Serrapeptase which is supposed to break up the bio-film. I am also on LSV probiotics and milk thistle based liver support.
I have been herxing on and off, with depression, and extreme fluctuation of energy levels each day. Many of my symptoms have either lessened or come less frequently but I should be on treatment for at least another few months. The biggest and most common symptom that hasn't gone away as much is the dizziness, most likely caused from the high blood pressure from the onset of my symptoms.
I just hope that that too will go away with time. Thanks for listening.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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posted
Yes as others have said sounds like a herx. detox and try to stick with it for a while and see if you come out of it. i know it's scary. i've been there. you want to quit -- i did and regret it. also, try to get tindamax of flagyl soon too. and stay ont he drugs for at least 4-6 months and until you feel better. GL!
Posts: 12 | From NJ | Registered: Jul 2014
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posted
Thanks, yeah I won't be giving up anytime soon, the anxiety I had from the disease alone was far worse than the herxing, even though its tough in different ways.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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LisaK
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Member # 41384
posted
quote:Originally posted by RyanXC: The biggest and most common symptom that hasn't gone away as much is the dizziness, most likely caused from the high blood pressure from the onset of my symptoms.
I have had the dizziness for a year. It has gotten better this last month. dizziness is a symptom of tick disease.
I had a friend that never lost the dizziness in the last 35 years of his life after contracting lyme.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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I'm very sorry that your friend has to suffer like that. Does he have chronic lyme?
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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LisaK
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posted
well, I HOPE I am better, but I have new symptoms now and I am getting discouraged...
my friend died. he had lyme undiagnosed for about 10 years or so. he never got the right treatment- didnt keep up wiht it I don't think. he got bad psychological symptoms. terrible
ryan, are you 'dizzy ' all the time? or does it come and go. I get very dizzy if I spin around or have my head go from sideways to straight - things like that make it worse. DO you have motion sickness?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I'm sorry to hear all of that, its very unfortunate that it went untreated.
I am perpetually dizzy, yes. I have both dizziness and occasional vertigo. It does get worse with motion. My blood pressure is also higher than normal right now.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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Sammi
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Member # 110
posted
Were you evaluated for all co-infections? Babesia can cause dizziness.
Posts: 4681 | Registered: Oct 2000
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posted
Yes, I had a full panel of all co-infections, mycoplasma was very high, everything else was 0.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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posted
Also, does anyone know if there is a section on these message boards that deal with relationship advice? I'm having some serious struggles right now.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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surprise
Frequent Contributor (1K+ posts)
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posted
RyanXC, are you 100% gluten free? I mean, everything gluten free? Glad they checked for celiac.
Sorry about relationship- general support section...
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Yes, I eat entirely gluten free, its a little difficult but I'm getting used to it.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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'Kete-tracker
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Member # 17189
posted
2 weeks "on", 3 "off", & 2 more "on" is NO way to treat B.B. (borrelia Burgdorferi) In fact, it can lead to resilience to the antibiotic[s] by the strain of Lyme that's in You!
It's *always* neccesary to cover ATLEAST 1 "growth cycle" (28 days) on the antibiotic[s], and be on a "bacteriocidal" (killing, or lysing) level of an antibiotic like doxycycline. No sens in just supperessing the borrelia activity.... & promote conversion to the other forms of the bug!
For *you*, depending on your weight & build, it can be anything from 100 mg twice a day to 200 mg twice a day... or more!
Sounds to Me like you really need to consult with someone more than just your P.C.P. .... for SURE.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
Question for all of you. Its been about 4 months into my treatment and my doctor told me that I could have 1 last bad herx before the final stretch of my medication for Mycoplasma P. I've had herxes before, but I feel like its something a bit different now. There is a TON of pressure in my head and my coordination and memory just seem off, as does my speech.
Has anyone ever had cerebellar ataxia, or something like that post-infection? I was doing very well the past few months, and I don't know if this is a herx or just a coincidence. My head feels like its going to explode. Tried calling my doctor but she said it sounded like a herx, don't have an appt until next week. If it doesn't get better soon I'll ask to have an MRI ordered.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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posted
I've been trying to find enhansa, read that it was a brain anti-inflammatory or it was recommended as such. I have stockpiled naproxen, anti-inflammatory.
I started getting dizzy spells, walking tilted down hallways, when I thought I had the ear "infection".
I also had an abscess by lymph node in groin. It would enlarge, drain, go away, come back, etc. I had a doctor cut it out in her office and stitch me up.
I have no solution, no diagnosis. Going to LLMD for first time this week. I'm still hopeful. Getting help from Lymie_in_md to use herbs in combination with the pharmaceutical antibiotics.
Thank you for sharing your story and I know that i'Ll be reading future posts from you about continued improvements and your success.
-------------------- * Posts: 74 | From Bowie, Maryland | Registered: Aug 2014
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posted
Sorry to hear about your story hermit. Sounds like me the past couple of days. I was able to push myself exercising because I had felt better, but now I can't run more than a few steps before feeling like I'm going to black out. Sure, the only other thing I can think of is D-Lactic Acidosis from the VSL probiotics I have been taking. I am a Celiac, and I don't know if anyone buys what this article is saying:
Maybe I can go off of my probiotics for about a week to see if it has any effect?
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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GretaM
Frequent Contributor (1K+ posts)
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posted
Ryan-how are you feeling nowadays?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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I think you need a new LLMD! Get on 300 mg minocycline plus 1000 mg ceftin. PM me for the Dr I recommend, he's out of state though but not a long wait.
Posts: 532 | From Texas | Registered: Oct 2004
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posted
Thank you for checking in. I actually just had an appt. yesterday. In June and much of July, I felt much better. But the past few months the dizziness has gotten worse and my blood pressure has gone back up to 140/80, which is high for me. My LLMD is retesting me for Babesia as well as checking a whole slew of things including kidney and liver function, which was normal back in July. She is recommending in the meantime that I see a cardiologist and a neurologist. I can definitely tell that really my only symptoms seem to be blood/circulation related.
She put me on a magnesium powder mix and Cardio HTN pills, which are a bunch of plant extracts and magnesium. I'm kind of hoping that I come back positive for Babesia so I know exactly what's wrong. I feel as though the mycoplasma has been dealt with for the most part. She just took me off the Rifampin, I'm staying on the Minocycline along with the VSL probiotic, LV-GB liver support, and Serrapeptase. I also went through a Deseret Biologics homeopathic treatment for the Mycoplasma in July.
The only other concern besides the mental/blood pressure symptoms is my skin which had been fine for a new months. Now it itches occasionally and I'm finding both small and larger light red spots. Idk if this is herxing, or if its something else, like Babesia or Candida.
dal123, why do you think that?
Thank you all for your continued concern.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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posted
My doctor plans to put me on Mepron if Babesia is the culprit. From what I've been reading, it seems like if you have a strong immune system, it can take up to a year for symptoms of Bab to show up, its been about 15 months since I've been bit.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Ryan-thanks for checking in.
Spots...boy oh boy, I have had my share of spots.
I had red patches that itched.
Then just red patches. Turns out it was Rocky Mountain Spotted Fever.
Then I had the scratches on my abdomen and back flanks, that was bartonella.
Cherry angiomas... Bartonella, mycoplasma
Small petechiae-like someone dotted me with a purple/red pen...Babesia
Small pustules on my face neck and shoulders, chest and back. Unknown. I believe fungal, namely aspergillus, as a month of Sporonox knocked those away.
Small tiny flesh colored blisters on the palms of my hands. They all erupt at the same time and leave tiny, perfectly round donut-shapes that peel. If one googles syphillis hands, the palmful of blisters shows up in one of those pics. I believe those are lyme spirochetes causing the rash on my palms.
...
Are your red patches raised or itchy? Where are they located?
There's another poster on here who's had the range of rashes also. Between the two of us we should be able to help you Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Hmm, it seems like I get different ones all the time, some come and go. I will occasionally get, as I do right now, small faint bands of blotchy purple spots, which are not raised or itchy. I usually get those below my armpit on my ribcage or on my back.
I have a lot of small red raised bumps on my lower abdomen, these also don't itch. They have slowly come back since being off the Rifampin the past 2 days.
I will get from time to time, dozens of small red spots on my shoulder or chest that itch, which are accompanied by things that almost look like hives. With these I will also get small itchy red bumps that are in a straight line, and will actually bleed, but those are actually more concave or crater like. This happens rarely.
I used to have a big raised red patch that would change colors to dark purple, but after being on the Rifampin for some time, it turned light brown and eventually disappeared.
I have a 2 red spots that almost look like acne, but don't really go away, one on my upper chest, one on my abdomen.
Thanks for the help.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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posted
I wish I could help more, but I can't seem to find any good pictures online.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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posted
I have a suspicion that I have a candida infection, I'm not sure if my doctor ordered one when I had my blood drawn. I'll have to ask on Monday. My whole body has become quite itchy.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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Judie
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Member # 38323
posted
"There is a TON of pressure in my head and my coordination and memory just seem off, as does my speech. "
That's what happened to me with babesia. I never tested positive for it (the tests aren't accurate and there are several strains for which there are no tests yet).
10 months into Lyme treatment my doc decided to do a trial of malarone. It was the only thing I took that touched the problem. I'm doing very well on it and I feel like that was a big obstacle in my recovery.
I've been infected twice and didn't have these symptoms the first time when it was just Lyme.
"small faint bands of blotchy purple spots, which are not raised or itchy. I usually get those below my armpit on my ribcage or on my back."
I had weird blotches like that. I suggest to take a picture of everything. I showed my LLMD the photos and she said it was a bartonella rash. I had one in my armpit and back. I've NEVER tested positive for bartonella, but it was definitely it (my doc said stretch marks don't go in that direction). It was streaky and blotty.
Perhaps when you went off rifampin, bartonella flared up. Do they look like this?:
"...The lesions change from red to purple to rust-colored before fading over a period of approximately 10 days..." (ignore the part about steroids since that's bad for Lyme, but they mention bartonella and other infections as a cause)
I also found this article about different presentations of EM rashes (they aren't necessarily a bulls-eye).
"Sometimes erythema migrans can present as a pustular lesion as is this one in the popliteal fossa inviting the scalpel of a surgeon. Sometimes the lesions are vesicular in nature, inviting a diagnosis perhaps of herpes simplex infection. Sometimes our round lesion is actually triangular. Sometimes it doesn't even look round or red at all and invites a diagnosis of an intertriginous fungal infection in the groin of this patient who was biopsied and proven to have Lyme disease. Sometimes the lesion is more plaque-like, inviting diagnosis of nummular eczema, psoriasis, or other similar lesions. Sometimes it is in unusual locations. Sometimes it is large like this one. Sometimes it is small with satellite areas. Sometimes it is multiple, appearing almost like urticaria or erythema multiform. "
Posts: 2839 | From California | Registered: Jul 2012
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Judie-I don't think my rashes resemble any of those, unless mine are simply much smaller and less intense.
I have been gluten free for sometime now and I've been taking probiotics. Will the fact that I'm going off the Rifampin help if I have Candida? Also, does anyone know the difference between symptoms of Candida and herxing for it?
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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Judie
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Member # 38323
posted
"I don't think my rashes resemble any of those, unless mine are simply much smaller and less intense. "
Mine were way smaller and way less intense. Take a picture of ALL rashes and marks. Mine didn't look quite like the photos either, but I wasn't sure.
I actually thought the marks might be from me leaning on something. Mine were probably about 10-20% of what those rashes were like.
I didn't even notice the rash. It was someone else who saw it and pointed it out.
Take pictures of all rashes/marks. They can be really helpful for doctors if you don't have the rash by the time you go in and if the tests are negative.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Ok, yeah I've been taking pictures of them, problem is some of them don't really show up, they're fairly faint.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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posted
So test results came back today. Apparently my CD-57 levels are still low to no surprise, at about 54.
Results are negative for babesia. However, the culprit seems to be the fact that I happen to have a mutated MTHFR gene, so my detox pathways have been blocked. Not sure why this didn't pop up in the beginning, it seems to be a more recent issue. Anyways, my LLMD told me to start taking Methylfolate and B-vitamins with my probiotics and my liver should be able to start detoxing itself. I'll restart abx for mycoplasma starting tomorrow.
Still waiting to see a cardiologist, but I had an EKG at my PCP office and it was normal.
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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Saw a cardiologist and he basically didn't have much of an answer for my high BP. He thought that it was possibly my adrenal system going into overdrive because of an infection, causing my body to freak out and mess with my hormones. Had EKGs which were normal. Had an ECG and right now wearing a holter, those results should be back soon, but I think my heart is pretty healthy.
My BP went from 160/85 to 140/70 in a week and from 140/70 to 100/50 in a day. Is this common for mycoplasma/Lyme treatment?
At the moment, I'm feeling worse fatigue than ever and low sex drive. I'm assuming adrenal fatigue. Severe lack of concentration, vision issues, confusion, and continued dizziness and balance problems. Tightness in my back and neck. Also more of those small blood red spots that pop up about every week and don't change at all. Any thoughts?
Posts: 73 | From New Hampshire, USA | Registered: Mar 2014
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I'm sorry to hear all of that, its very unfortunate that it went untreated.![[Smile]](smile.gif)
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