posted
I have been experiencing strange swelling, particularly at my hips, but it also occurs at the back of my neck, and in my button as well. Sometimes it feels like it may be in my back, but I cannot clearly feel it there so its hard to say.
In my hips I will get this weird watery feeling fluid under my skin. It sort of feels like a water balloon but it does not feel cystic, so almost more like a water bed feeling.
It giggles in a strange way when poked. It is not dense, because when I poke at it more firmly my finger easily hits bone. One doctor tried to tell me I was just being vain when I asked about it, he was a rheumatologist.
I can assure you it is not vanity, it does not feel like any other fat or muscle tissue on my body. If I have been lying down for a while it almost feels like it pools at my his. But when I have been upright for a time it seems to pull in my buttox.
It is really really weird, my boyfriend agrees it does not feel like me. It never completely goes away but someways it seems to be more apparent then others.
Has anyone else experienced this? Does anyone now what this is? Is it Lyme? Is it a co-infection symptom?
I'm kind of stumped by this symptom. Please help!
Posts: 54 | From Central, MA | Registered: May 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you managing candida well with probiotics and other supplements?
Other than possible swelling / inflammation from candida, lyme often causes weight gain due to the stress on the adrenal system, and just with inflammation.
Are you gluten-free? That often also helps reduce inflammation.
Do you get dizzy when you stand up - or tire excessively with standing for just a short time? If so, it could be a kind of low blood pressure and that can cause "pooling."
You probably are clear of additives but, just to be sure because food additives can also cause inflammation: --------------
posted
The weird thing is despite this swelling, which I first noticed in my neck, actually after starting a month long course of nystatin which I have since finished, I have actually lost weight.
I'm actually sort of horrified that everyone probably thinks I've developed an eating disorder. I'm literally skin and bones, none of my clothes fit. I've lost about 12 lbs. I now weigh 105 at 5'5" .
It almost feels like my muscles have turned to mush, I feel like my back muscles have disappeared altogether, all I feel on my back is ribs.
I just have this weird fluid that pools on places in m body.
Any idea what's causing it?
I also have been developing am ever increasing list f food allergies, so I don know if it part of an allergic rection?
I hesitate to take allergy meds though, as I know they will suppress my immune system.
Posts: 54 | From Central, MA | Registered: May 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tucker-Bell,
You ask again: "Any idea what's causing it?"
I'm sorry that the replies above were not clear. Many effects of lyme can cause this: inflammation; low blood pressure of a unique kind; adrenal stress; lymph inflammation; etc.
Now that you say you are developing food allergies, it seems that inflammation could likely be connected.
The body tissue swells due to increased toxins from lyme.
Food sensitivities can also cause swelling.
Are you Gluten-Free? If not, that may help.
I had come back to post the guidelines below, for the self-care suggestions.
Do tell your LLMD about this at your next visit but really, this is nothing to worry about as long as you are proactive with support methods.
Lyme changes many things about the body. Still, with good treatment, this will likely improve. It just may take time - and attention to decreasing inflammation with
Liver support (milk thistle, NAC), adrenal support (Cordyceps) & antioxidants, etc. See the supplement list here for a start:
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
posted
Also despite obvious fluid swelling, when blood work was done to detect swelling, it was negative. Does anyone know why this could happen?
Posts: 54 | From Central, MA | Registered: May 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Blood work to "detect swelling"? You wrote two weeks ago: "Sed rates are normal despite obvious swelling."
Lyme tricks the body in all kinds of ways. Sed rate test sometimes are sky high but also, sometimes normal, even in severe lyme.
If you can SEE swelling, there is swelling. If you can feel, it's there.
Gently but firmly take your finger and push into one of these areas, hold it for 5 seconds and release.
How long does it take for the finger indentation to disappear?
---------------------
Looking back over your posting history, it does not appear that you are getting lyme treatment or have even been to see a LLMD?
Is is possible that you get to a LLMD? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
It disappears right away. The skin bounces back immediately. Just as it would in a water balloon. That's why that's the best way I can describe how it feels.
My knees use to swell from gymnastics injuries, it feels just like that. But in my sides and the back of my neck.
Posts: 54 | From Central, MA | Registered: May 2012
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posted
As far as the supplements go and food allergies, it's a bit confusing. I don't go to the LLMD until August 15.
The holistic doctor put me on colostrum for low IGg ( subclass 1 and 4), but I'm allergic to milk, it made my digestion awful. I was taking cod liver oil, and vit D as a supplement. But recently I started reacting to fish.
Im also allergic to eggs, nuts, and wheat. So yes I've been gluten free for quite some time.
I also have to avoid as much as possible, tomatoes, garlic, ginger, avocado, and white beans.
The list of things I can eat I feel like is shrinking everyday.
I'm a little scared that I'm going to start to not be able to get the kind of nutrition I need. I am even limited in the supplements I can take. And I already feel like I'm wasting away.
I'm almost thankful for the swelling, I'd look more emmaciated without it.
Posts: 54 | From Central, MA | Registered: May 2012
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posted
As far as the supplements go and food allergies, it's a bit confusing. I don't go to the LLMD until August 15.
The holistic doctor put me on colostrum for low IGg ( subclass 1 and 4), but I'm allergic to milk, it made my digestion awful. I was taking cod liver oil, and vit D as a supplement. But recently I started reacting to fish.
Im also allergic to eggs, nuts, and wheat. So yes I've been gluten free for quite some time.
I also have to avoid as much as possible, tomatoes, garlic, ginger, avocado, and white beans.
The list of things I can eat I feel like is shrinking everyday.
I'm a little scared that I'm going to start to not be able to get the kind of nutrition I need. I am even limited in the supplements I can take. And I already feel like I'm wasting away.
I'm almost thankful for the swelling, I'd look more emmaciated without it.
Posts: 54 | From Central, MA | Registered: May 2012
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posted
It disappears right away. The skin bounces back immediately. Just as it would in a water balloon. That's why that's the best way I can describe how it feels.
My knees use to swell from gymnastics injuries, it feels just like that. But in my sides and the back of my neck.
Posts: 54 | From Central, MA | Registered: May 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Lyme causes many people to develop food "allergies" or sensitivities. A friend of mine could finally only eat 5 foods by the end of lyme treatment.
It turns out that in her case, she was unable to detoxify. That means that her body could not eliminate the dead lyme germs and other toxins (poisons) that accumulate in the body. So, the immune system started reacting to everything as if it were a poison, including foods.
Once she got detoxified, she was back to normal. So, it may very well be that you also have problems detoxifying. That is not unusual for lyme patients at all.
I would make sure to tell the lyme doctor about all of the sensitivities to food. A good lyme doc will have you take things that open up the detox pathways, like liposomal glutathione. See if you can buy some and try it.
Also, drink lots and lots of water with fresh lemons squeezed into it. Water flushes everything out of the body and lemons cleanse the body according to my lyme doctor. Or, as Dr. H. in NY says, "Dilution is the solution to pollution."
I hope you are seeing an excellent lyme doc in August. The doc is the key to getting rid of this horrendous disease. Can't emphasize that enough. That's what I learned in my lyme journey.
I didn't get rid of my diseases until I went to a top notch lyme doctor. I wasted 2 years with inferior doctors who didn't know enough to get me well. That's a lot of time wasted taking antibiotics. So, I stick around here just to help people get to the great doctors right away.
It is now over 7 years since I got rid of lyme and company. And, I had it at least 10 years undiagnosed.
Be sure to mention the fluid you are noticing at your first appointment.
I know that lyme patients either get very thin or very overweight with this disease. Hopefully you can get the weight problem turned around by detoxifying. Then, you may be able to go back to eating just about everything (except gluten). Hope so.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
It disappears right away. The skin bounces back immediately. Just as it would in a water balloon. That's why that's the best way I can describe how it feels.
My knees use to swell from gymnastics injuries, it feels just like that. But in my sides and the back of my neck.
Posts: 54 | From Central, MA | Registered: May 2012
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posted
Also despite obvious fluid swelling, when blood work was done to detect swelling, it was negative. Does anyone know why this could happen?
Posts: 54 | From Central, MA | Registered: May 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sed Rate blood tests are not the end-all, be-all to determine swelling or inflammation.
YOU are your own lab. You see it. You feel it. By all accounts of your symptoms and tick-borne testing (in past thread) this is nothing surprising at all.
TF explains it well regarding toxins and liver stress.
Well, that might be what is called non-pitting edema. I know this is disheartening but, really, just accept your body for how it is, here and now.
Do what you can from the suggestions above.
From your history & test results (from a previous thread), you may be dealing with 3 or more tick-borne infections.
Any of these can cause swelling. So can the food reactions.
I'm all out of steam. Others may have suggestions beyond mine. Glad to see you have a LLMD appt in two months.
In the meantime, is that holistic doctor doing anything for you about the lyme?
If the holistic doctor is not ILADS and LL, they won't be of much help.
Can you at least take Olive Leaf Extract? Allicin? Berberine?
LIVER SUPPORT is a must (Milk Thistle the most common). That, alone may help reduce some swelling.
Do you have Buhner's book: "Healing Lyme" ?
Can you find an ILADS educated LL ND (naturopathic doctor) to help until Aug.? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have had a lot of joint swelling with my Lyme. A LOT. My knees get the pockets of fluid you are describing. I had the fluid so bad I could barely bend them for a few months.
When my joints are swollen, they feel tight and "full". My dr said that is the fluid pooling in my tissues around the joints. In my knees the fluid is just more visible than in the other areas (fingers, ankles, wrists)
Posts: 8 | From baltimore, MD | Registered: Jan 2012
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posted
I'm seeing a dr. m in CT in August, who comes highly recommended. I have my fingers crossed.
I was under the impression the holistic doctor I saw previously in MA was more Lyme knowledgable but she said " she was not convinced it was Lyme" so I kind of lost all faith in that doctor. She also dismissed several symptoms, which is always frustrating.
I'm currently in Turkey. Staying with family and hoping to be distracted till I could get in with the real LLMD. But the ever growing food allergies are making daily life tough.
I will look into the supplements you suggested and see if any are available to me here.
Strangely enough you can buy antibiotics over the counter at pharmacies here without an rx. But I'm not sure self treating is the best option. Nor do I want to feel worse so far from home.
Posts: 54 | From Central, MA | Registered: May 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you are in Turkey, there should be some excellent herbalists there. I'm sure you can find olive leaves there for tea.
As for food allergies, go for the vegetables and that stellar Mediterranean diet, just minus the wheat and the wine. (I'd love some braised lamb tonight instead of what's on my menu.)
Foods with lots of spices & garlic should help. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Btw I'm sorry for not saying so earlier but thank you for all your words of wisdom and knowledge.
It's is so wonderful that those of you who had heeled and rid themselves of these nasty bugs are still willing to take time out of their day to help those of us feeling lost through some of the confusion.
I am only at the beginning of this journey ( despite most likely having it for the past 15 years or so, worsening over the past 3, as I have been a preschool teacher since that time, and I believe the germ overload from all the things kids can carry, added stress to my already compromised immune system), but I hope when I carry more knowledge I can help those just beginning this journey as well.
I can't thank you enough.
Posts: 54 | From Central, MA | Registered: May 2012
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Research canine ehrlichiosis. Swelling in the legs is common in the advanced stage. Also weight loss with muscle wasting, especially with muscle atrophy along the spine.
The allergies I attribute more to Babesia.
These are dangerous infections. There are some lab results that are typical for Ehrlichia. Maybe you want a doc to order those. You could always take Doxy until your August appt.
posted
I'm having trouble finding good information on canine ehrlichiosis in humans. Do you have any website recommendations.
My spine muscles always hurt so bad, everywhere else on my back I feel like the have disappeared. But the muscles along my spine are always knotted and painful. Sometimes the spasms tightening so much that a feel like it is moving my ribs.
My ribs also feel like they pop and move over each other in and out of place. Perhaps this canine ehrlichiosis is the culprit.
Posts: 54 | From Central, MA | Registered: May 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
then add: edema, swelling, inflammation or whatever other cross-search terms you like.
Then do the same search pattern with a web search. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say: " . . . the muscles along my spine are always knotted and painful. Sometimes the spasms tightening so much that a feel like it is moving my ribs." (end quote)
While all that you describe certainly goes with lyme and other TBD, sounds also like
posted
I've been tested for magnesium deficiencies, and they are well with the normal range. I thought all the muscles pains and knotting could be that too. That was actually my first thought months and months ago even before Lyme etc was on the radar.
But magnesium is fine, not even close to low,I know this stuff can cause faulty blood work in other ways, can the same happen for magnesium results?
Posts: 54 | From Central, MA | Registered: May 2012
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