Suffering for a year, confusing worsening symptoms, I'm so desperate please help

Please I know this is long but if you can give me a chance and read through I am so desperate for help.

I've been suffering from a feeling of liquid underneath my skin that constantly feels like its moving for about a year now. It was originally just in the first layer of my skin and it was puffy and swollen, the skin has become extremely stretchy and saggy in areas. My armpits had a lot of fluid build up inside the skin near them and would create an endless musk no matter now much I cleaned the area. I can quite literally pull an area of my skin and fluid will move to different areas when I do. You can even hear squelching of fluid underneath my skin. Most recently the fluid appears to have moved deeper, now it lies underneath a layer of fat above my muscle. You can now grab the fat on my arms and legs and feel a clear distinct separation between the two that was NEVER there before, the fat is also quite loose on my body, like its no longer connected to the muscle. My skin has recently become extremely itchy since this happened.

My list of symptoms has become quite long: I suffer from fatigue, full body pain, weakness, stretchy/puffy skin, red/painful eyes, headaches, loose fat (not in the overweight way I'm extremely underweight at this point but the fat I have sags and is no longer connected), full constant body pain ALL over, now the pain feels much deeper than before and I'm having quite a bit of chest pain, I had a red streaky rash on my back which looked quite similar to the Bartonella rash which is why we are down the lyme path. Additionally I have had a post nasal drip with yellowy mucus since this all started around July 2017.

In terms of tests and treatments, I have seen many specialists including an infectious disease doctor(wasn't convinced it was an infection), a rheumatologist, a functional medicine doctor, multiple neurologists (all said pain was not neurologically caused), multiple ENTs, and switched around several primary care doctors. In terms of results this is what has been determined:

I had a positive ANA antibody test but not extremely elevated (this could be due to possible GI autoimmune diseases however), all tests (western blot and ELISA) thus far for lyme have been negative but I am trying a different testing agency and testing for Bartonella now (I intend to also be tested for babesiosis and anything else that might line up I'm more than open to suggestions on that), my WBC is relatively normal it was around 9.5 then down to 5.4 after some antibiotics, other than that all my results came back normal.

My rheumatologists believes that it is some sort of autoimmune arthritis and wants to put me on immunosuppressors however my functional medicine doctor believes that's the last thing we should be doing and could be fatal treatment if I do have a hiding infection.

I've been on a two week round of Doxy, after that I went on Rifampin and azithromycin for a few days but my gut couldn't handle it and I developed some sort of leaky gut issue so I had to stop. However these antibiotics seemed to get rid of a lot of the fluid beneath my skin and in that regard I felt better minus my gut which was leaking everything I ate (still is a bit, but on a special diet for it with some improvement) Being tested for SIBO and Candida soon. My functional medicine doctor believes antibiotics are too much for my system so I'm taking a Bartonella herbal supplement which I started a week ago on a low starting dose and I'll build up to a higher dose. My symptoms are getting worse every day now, I can't bathe on my own, I can't stand for long periods, the pain is so severe I can only lie in bed.

The symptoms deeper in my tissue between my fat and muscles only began after my gut began leaking. I'm beginning to wonder if whatever is wrong with my gut spread into that tissue, such as Candida. This is also when the itching began, the leaky gut symptoms and these fat/muscle symptoms began about two weeks ago.

I don't know if I'm on the right path and I'm so scared and confused. I don't know if this is lyme or something else but any insight is much appreciated and very needed. I sincerely have given up hope I will make it through this.

To clarify, my doctors just told me my results for the western blot was negative. I didn't receive the specific numbers from it but I'll contact the doctor and get them to post here.

Post Edited (selfdestructingbody) : 6/5/2018 6:04:14 AM (GMT-6)

Hello Dahlias thank you for the response.

I can't swallow pills as whatever this is has affected my ability to swallow properly and I inhale any pills I try to take. As a result I've just been eating a lot of probiotic foods like coconut milk yogurt, kimchi, chickory root, etc. I'm thinking of trying a probiotic like symprove or kevita though due to them being drinks and low on sugar for my gut.

I did a few epsom salt baths a few months ago with minimal changes but I'm more than willing to try anything at this point. I'll start up again tomorrow.

As for herxing, I'm not sure. I did have the feeling of burning all throughout my body after taking the antibiotics, but the feeling started the same time my gut began leaking. I wasn't sure if the burning was from my stomach acid burning me or if it was the bacteria dying off (if it is a bacteria). This was directly after being on antibiotics though, I haven't had any symptoms of herxing nor relief of the fluid feeling since starting the Bartonella drops.

Welcome, selfdestructingbody!

I am sorry for all you're going through, but glad you found us here.
I have had the sensation of warm water under the skin, but never anything I could see.

Your functional Dr. is right - do not do steroids if you have an infection...as they are immunosuppressive and could increase the infection.

Please do post your WB results - as a negative result could have indications - i.e. a positive lyme specific band that would back up the symptoms you are experiencing.

You need an experienced LL Dr. to guide your treatment.

I don't usually recommend one over another...but because of the severity of your symptoms, along with the gut issues and difficulty swallowing...you might want to consider a LL Dr. who can treat with IV abx - so it is bypassing your stomach.

There is a LLMD - one of the most experienced ones who does IV abx.
Send me an email if you'd like more information.

In the meantime, as Dahlias mentioned - work on your gut. Take good probiotics - different types throughout the day.

And see if you can get a good detoxing regimen going.
A lot of our symptoms are caused by the toxins the bacteria creates when it dies off.

Effective detoxing can help remove those toxins.

- Make sure you're drinking lots of water every day
- Squeeze some fresh lemon juice into some glasses
- Take the probiotics
- Take something for your liver - i.e. Milk thistle extract is one
- take warm epsom salt baths
- Dry brush your skin prior to bathing or showering
- Do light exercise - i.e. yoga, short walks - even if it's just around the block

Start with a couple methods...and every few days add in another one.

Here's a website with more detox ideas:

www.tiredoflyme.com/detox-methods.html

There's a thread at the top of the page "New to Lyme?..Start Here!" It's got a lot of information in it...take a look through it.

please feel free to ask any questions here.

And...you can also send me an email.

Hi Dahlias, not OP but

I was wondering if it would be more beneficial to use Green Vibrance https://shop.vibranthealth.com/products/green-vibrance?variant=47532601732 rather than VSL powder packets? I cant afford both but I read in the starter forum that Green Vibrance was suggested. I know it has less probiotics but the other immunboosting benefits seem too good to pass up. Thoughts?

Dahlias said...
Probiotic foods are good, and drinks like kefir and kombucha may be good too. There are also probiotic powders that you can mix with a drink and you can get much higher amounts that way. I would push the probiotics hard right now. VSL is one that is highly recommended and it's available as a powder. (It's expensive but very potent.) I also have started taking L-glutamine for gut repair and it helped a great deal. That is available in powder form too.

You mentioned that symptoms have been getting worse every day. When did *that* start?

Definitely when you're killing bacteria you need to detox, so even if it didn't seem to help a few months ago, it's still necessary now.

Difficulty swallowing can be a symptom of some of these infections that hopefully will improve with treatment. I have had that at times.

Dahlias,
That's great to know! I'll look into VSL powder, I used to take the pills when I was younger and dealing with different gut issues.

Here's the timeline of it getting worse recently it's a bit confusing so bear with me:
5 weeks ago: I began 2 weeks of Doxy, that went along fine and I had no gut issues but my healing began to plateau and I stopped seeing any improvements after the first week or so of the antibiotic
3 Weeks ago: After those two weeks were done I began Rifampin and azithromycin, I was on that for about 4 days and then my gut had a severe leaking reaction to it, I went off both meds but I felt an acidic burning coming from my stomach and running down my legs and up my arms, my skin seemed to be feeling better but I was dealing with a lot of gut issues so it was hard to focus on each problem
2 Weeks ago: I began healing my gut with a no gluten no dairy no sugar diet, I've noticed some improvements but my gut still regularly leaks and causes me severe pain which I believe is spreading to my legs. Directly after leaking occurs it feels like it goes down my legs and has left me with very stretchy skin in my thighs and calves that was never there before I began leaking.
about a week and a half ago: I began the herbal Bartonella supplement and in the past week or so my symptoms have felt much deeper in between my muscle and fat in my legs and arms and the fluid seems to be coming back much more intensely than before. I'm a bit worried whatever is wrong with me is becoming resistant to the antibiotics I was on.

I have had post nasal drip since this all started, when I went on antibiotics that mucus turned from a thick yellow/white infected looking pus, to normal clear looking mucus when I started feeling better. Over the past few weeks since stopping the antibiotic the mucus has slowly thickened and returned to its previous state. I believe these symtpoms are connected since the mucus turned to a more infected state again just as my symptoms became worse.

I hope so too, I'm glad to hear it went away for you!


Girlie,
I've actually just discovered my functional medicine doctor is an LLMD! So yay one less doctor to see. My functional med said that even IV abx will still mess up my gut. It's hard to say what is causing my deep body pain at this moment because whenever my gut leaks/when I eat I feel horrible liquid-like pains in my legs that feel as though they move throughout my body into my arms and chest.

I've begun a detox method but noticed some concerning side effects. I followed the directions of detoxing in the new member form with epsom salt and hydrogen peroxide for about 10 minutes. Later that night I felt additional arm pain, painful numbness in my toes and fingers, and additional pain in my legs. Is this a herx reaction? If these symptoms mean its working then I will more than gladly work through the pain, I've suffered for too long to care. I just want it gone.
I'll definitely try the additional methods as well but I figured epsom salt baths would be best since it may help dry up the fluid in my body that I constantly feel.


Notime4lyme

I definitely feel this is related to water retention but perhaps also like some type of liquid infection in the connective tissue? I know that sounds far fetched but hear me out: When I eat sodium rich or really sodium at all I feel my pain much more intensely and I feel liquid trying to move all over my body especially in my head about an hour after eating something salty. That I believe is definitely some type of strange water retention, though it happens regardless of how much water I drink with it. However I have constantly moving liquid under my skin regardless of whether I eat something or not. You can feel it under my skin when you touch my arms and legs, there is a clear separation of my skin and fat from the rest of my body and it feels almost thicker/slower moving than when I eat salt. No matter what it is there, the only time it lessened was when I was on abx.

I have had my kidneys checked they seemed to be fine.

Is there anyway you could indepth describe your issues with water retention? I've found no one similar to my issues with this and I'm not totally convinced it's Bartonella. Hearing your story would help tremendously if you don't mind.


As an overall update, I ordered VSL#3 packets and will begin them ASAP. I mentioned this earlier but to reiterate: I followed the directions of detoxing in the new member form with epsom salt and hydrogen peroxide for about 10 minutes. Later that night I felt additional arm pain, painful numbness in my toes and fingers, and additional pain in my legs. Is this a herx reaction?

Thanks so much guys.

Also make sure to use only warm water for the baths, as too hot of water can cause more kill off of bacteria and then more herxing.

In regards to your timeline of treatment in the past 5 weeks: Looks like you are hitting many things with the treatment and some of us have to back down on treatment and move ahead slowly.

Herxing while it shows us that we are killing the bacteria, its not good for the body. It can make you feel very bad and the body needs time to move all those toxins out of the body.

Talk to your llmd about the use of binders like activated charcoal or zeobind(there are others).

Make sure to have regular bowel movements as this rids the toxins so they are not reabsorbed in the body.

Take care and I wish you the best of healing.

selfdestructingbody said...

Girlie,
I've actually just discovered my functional medicine doctor is an LLMD! So yay one less doctor to see. My functional med said that even IV abx will still mess up my gut. It's hard to say what is causing my deep body pain at this moment because whenever my gut leaks/when I eat I feel horrible liquid-like pains in my legs that feel as though they move throughout my body into my arms and chest.

I've begun a detox method but noticed some concerning side effects. I followed the directions of detoxing in the new member form with epsom salt and hydrogen peroxide for about 10 minutes. Later that night I felt additional arm pain, painful numbness in my toes and fingers, and additional pain in my legs. Is this a herx reaction? If these symptoms mean its working then I will more than gladly work through the pain, I've suffered for too long to care. I just want it gone.
I'll definitely try the additional methods as well but I figured epsom salt baths would be best since it may help dry up the fluid in my body that I constantly feel.

Thing is - you will need to treat these infections - either orally with abx or herbs...or something.
And IV abx bypass the stomach...so not sure why your LL Dr. doesn't think they would be a better option at some point - after you've worked on healing your gut...as that needs to be done - regardless whether you go on abx or not.

It's best to start the epsom salt baths with shorter times...ie maybe just 5 minutes would be better for several weeks...and then move up to 10 minutes.
And as goshawk said - make sure they are warm and not hot.

If you have Babesia (sounds like you do) , then it's likely you have lyme and possibly other coinfections.

Starting a treatment for Babesia is a good idea...as when the anti-malarial is prescribed, there's always one or two antibiotics to take with it...which will hit lyme.

It's certainly a good start...and you will most likely have a reaction - i.e. herx...and/or some improvement...but it may take awhile...not always happens within a week or two...so keep that in mind.

Re: immunosuppressants - make sure you give the infection (s) treatment a fair shot...because if you take the immunosuprressing drugs and you DO have infection(s) - the infections will take advantage of that and you will likely get worse.

So,immunosuppressants are a 'no-no' when you have lyme and coinfections.

selfdestructingbody said...
Girlie,

I definitely did better when I took 2 weeks of the doxy, though my improvement began to become stagnant after the first 5 or so days. And the fact that the post nasal drip I've had through all of this went from thick yellow/brown to completely clear after treatment to me suggests that at least SOME type of infection is going on.

Do you know if it's possible to be positive for lyme with only one positive band? Specifically Lyme ImmunoBlot IgG 41*.

Even if it isn't lyme I'm convinced there is an infection, I just hope abx, antiparasitics, a very healthy diet, and detox baths will be enough to get me back to somewhat of a normal life again.

YES - there are many false negatives - the testing really isnt reliable.
The streaks are indicative of Bartonella.